HLA B27 + and Frustrated!!!

[annikins]

My name is Ann

I was diagnosed with Ankylosing Spondylitis (HLA B27+) at the age of 21 back in 1994. I tried oral steroids, indomethacin and finally Methotrexate which finally put it into remission. I was symptom free for several years (had two healthy baby girls) and then had one flare in my knee in 2003, I think. It was treated by draining, injecting steroids, and indomethacin. No more signs of AS since then.
I hate to admit that I do not remember exactly when my first iritis flare occured, but I know it was at least 7 years ago. I usually end up with at least 3 flares per year which are treated with predforte drops. Last week, I had another flare and started my drops. I noticed that the pain/redness was not improving, so I went to see my Dr. She said that there was a lot of inflammation (looked like a blizzard in my eye) so she wanted to be more aggressive. She prescribed dilating drops (the first time for me) and predforte every 2 waking hours. [ I must say, you can really creep people out when you have one dilated pupil and light green eyes!!!] I saw her yesterday and she was not impressed with the results. She said that I could discontinue the dilating drops if they were annoying (no pain - or photophobia since Sunday) but I should use predforte every hour and come back to see her next Monday. If she doesn't see marked improvement, then she will put me on Durezol.
I have read several posts where Mike suggests NSAIDS for HLA B27+ iritis. I tend to take one aleve almost every day to control headaches, etc - so I wonder if indomethacin would work if I am already having multiple flares while taking naproxen on an almost regular basis??
Methotrexate worked years ago for my AS, but I seem to remember feeling yucky while taking it. I don't know - I think I will talk to my opthamologist next week and see what she thinks about systemic treatment.

One more point - My 12 year old daughter has had 7 flares of episcleritis since last September. She has no joint pain, but is episcleritis a precursor for iritis??

Thank you so much for this forum!!!
Ann

[Mike Bartolatz]

Ann,

you will probably require systemic Methotrexate, cellcept or Imuran to quell the inflammation as your past experience required this; alone or in combination with a TNF A blocking drug such as Remicade or Humira. Enbrel doesn't work for uveitis. be prepared for the iritis to ping pong over and back from eye to eye as well as this is what normally happens with HLA B27 related uveitis. sometimes it is much more difficult to control uveitis in women when they get into their late 30's when hormone levels start changing.

as to your daughter, get her tested for the HLA B27 gene, then get an ophthalmologist to make a complete exam of the eye as you can get pars planitis with this gene. only the middle of the eye is impacted and it can be just exudate behind the iris between the cilary body and the retina. it is very hard to see this part of the eye and the exam is intense to say the least. if there is active inflammation the eye can be very photophobic and it is difficult to tolerate the light. the diagnosis of episcleritis makes me wonder a bit. the red eye associated with uveitis startes at the iris and extends toward the outer corners of the eye but it doesn't go all the way. episcleritis is more of a entire red eye situation without pain.

if there is eye pain, then it would be scleritis present and it is treated the same way as iritis, with DMARD drug Methotrexate, cellcept etc.
scleritis is associated with ankylosing spondylitis and the other enteropathic arthropathies. often symptoms overlap between them. the things associated with the HLA B27 gene are ankylosing spondylitis, psoriatic arthritis, reactive arthritis, ulcerative colitis and Crohns disease. Gi complaints are common with all of these things as well as arthritis and uveitis. if your child has any signs of arthritis or GI complaints get her tested for these conditions.

I hope this helps and welcome to the group,
mike